Managers of the 50 most important pediatric hospitals in the world have met at Sant Joan de Déu in Barcelona, ??the only Spanish center that is part of the network, in an annual meeting, from which a manifesto has emerged. The document calls for collaboration between public administrations, companies, universities, health and research centers and patient associations to improve the comprehensive approach to rare childhood diseases.
Mark Wietecha (Detroit, USA, 1958), executive director of the Children’s Hospital Association (CHA) – a grouping of more than 200 centers around the world – is one of the main voices of a meeting that has clearly the need to “achieve high-level multidisciplinary care, a precise and personalized diagnosis and the best treatments”. Between 6,000 and 8,000 rare diseases have been described, affecting between 6% and 8% of the population, mostly children.
What role do pediatric hospitals play within a health system?
two things These hospitals are the ones that treat patients with minority diseases and are the ones that in some way advocate for the needs and health of these patients. Socially, pediatric hospitals are the most visible when there is a need associated with children. In the case of Ukraine, for example, children’s hospitals took action to help.
How do they contribute to the good health of future adults?
Through health promotion programs in different lines. For example, environmental health programs to prevent asthma. Or encourage good nutrition to prevent diseases associated with excess weight. Or create awareness about the different types of child abuse… These are things that go beyond treatment, such as encouraging the use of helmets among children who do skateboarding or similar activities.
You have alerted authorities to the pediatric mental health emergency in the US.
This is a huge global problem. We also talk about countries like Australia, Great Britain, Canada and Europe in general. For many years, our work has been dedicated to the treatment of physical situations. But, above all, with the circumstances surrounding the pandemic, we are aware that there has been a mental health problem in children that even leads to an increase in suicides.
How relevant is equity in child health in the world?
At this meeting of the International Executive Forum of Pediatric Hospitals (Chief), some participants from China have made it clear that they intend to improve the environmental situation in their region to protect the health of children. The needs are similar all over the world. Families want their children to have a stable, safe situation, to be able to grow… The message is similar, there is a consensus among all the participating hospitals.
Is child health coverage in the United States enough?
Treatment of pediatric patients in the US and Europe is fundamentally very similar. What changes is the social environment that gives rise to how this treatment can be covered. For example, in the USA, when a child is born, the mother does not have the opportunity to stay at home for a long time, while in Europe it is the opposite: there is a lot of social provision for the fact that fathers and mothers can stay at home to take care of the children. The social support structure for families with children is much more important in Europe than in the US. From a social point of view, in the US a poor family cannot provide support for children, who will consequently have less care and more illnesses. It is a problem, there is no political will to support this process, but this does not mean that in the USA they do not love children, but that there is no social support.
Do you see it possible to change this perspective?
Yes. It’s changing. There is provision, but there are not the resources or the taxes for this kind of support. In Europe there is a cultural element that has a much longer history, perhaps more awareness. In the USA the culture of the pioneers has not given rise to paying attention to these issues, although the situation is improving.
Are they ready to deal with global emergencies?
In crisis situations such as those in Ukraine or Palestine, patients with chronic illnesses usually arrive at our hospitals, but it is a very slow process, it is not coordinated, time is wasted… And some of them die. One of our responsibilities is to make this process more efficient. We are trying to reach a consensus to coordinate these efforts between hospitals and entities such as the Red Cross. We have to act as a back office so that from our places we can support the oenagés that are in crisis areas. The oenagés have told us that this is a necessity.
